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Cyclone Disability
Everyone of us has had
their own personalised version of growing up and whilst the template
of life for most is the same we have all had different experiences.
The families that we come from are different, the cultures that
we live are all different, life's opportunities for us all have
been different. Mostly along the way we have control over the decisions
we make, we are fairly comfortable about the directions we are taking,
we take a lot of things for granted and generally go forward with
our lives. At the stage in our lives where we make the decision
to have children we have thoughts like other parents before us -
we say and think the usual things not caring if it's a boy or girl
just as long as it's healthy.
The point in our life
when we learn that that our child has a disability will be different
for all of us but the effect it has on us will be similar. It alters
our expectations of parenting, throws us into a world of unpredictable
emotions and dumps us into the patchwork of services that exist
to support families like ours.
This change in our lives
is as unpredictable as the weather. With the weather we know the
four seasons will happen year in year out, forecasters can now give
us the prediction for a whole week but you still don't know until
the next day if it will turn out the way they predicted. With our
own lives some doctors try to become the forecasters and often the
long range forecast is fairly bleak. As parents we mostly try to
avoid the long range forecast and just manage the next 24 hours.
The trouble is you can never predict how you are going to deal with
the little cyclone of emotions that are part and parcel of the new
parent that you have become.
Remember before you had
this child life was a breeze and all mapped out – suddenly
"cyclone disability" has entered your life and the directions
you now take will be different. Whilst the initial cyclone goes
on it's way, in it's wake are little whirlwinds of emotion that
enter your life when you least expect it. Nothing is predictable
any more.
The full force of the
cyclone hits when you learn that your child has life long disabilities.
When you are in the eye of the cyclone you think that you can not
bear it any more, the pain you feel for yourself, your partner and
your child almost tears you apart.
Just when this happens
is different for all of us. Some of us had some warning, for others
the cyclone hit at birth and some were living in the cyclone belt
but it took longer for the cyclone to hit. With the aftermath of
that initial disclosure you start to rebuild outwardly, at least.
Just how you rebuild will be as individual as the person that you
are. The love for your child prevails and the practical aspects
of identifying what to do next fill your life. Now just like the
unpredictable nature of where a cyclone touches down, our access
to services will parallel that pattern – it seems to be just
as unpredictable. Everything relies on the expertise of the medical
person who makes the diagnosis, their knowledge of the service system,
the type of disability, the age of the child, where you live, the
waiting lists you encounter and your tenacity to persist.
The predictable aspects
of rebuilding your life include the introduction into your life
of many new people, continual questions and assessments relating
to your child, more assessments again to access services, the need
to meet eligibility criteria before getting limited services and
then, depending on where you live and how much of the inevitable
small "bucket" of money is left according to the time
of year it is, the probability of only being put on a waiting list
for services.
Some of the spontaneity
leaves your life and decisions that in the past were trivial can
now seem daunting and are put aside. Just going for a walk can become
an expedition - the sunshine calls, you gather the children for
the short walk to the local playground and before you even get to
the front door you are questioning the decision. As you lift your
child from the floor to the change table and lift again to the wheelchair
some of the sunshine outside seems to fade. As other little hands
grab yours there is a need to continue.
The short walk includes
sideways glances from passersby until you reach your destination.
Running ahead the other children spill onto the playground as you
stop and lift again, there is no physical access into the playground
for this little boy, so you carry your excited child to a little
rocking duck asking him to grasp the small protruding handles as
you help adjust his legs - all the while looking out for the others.
"Mummy look at me" "come and push me mummy"
- you can not leave the little boy who needs you there to keep him
on the rocking duck so you smile and say "I'll be there in
a minute."
Others come to the park
and a mother with a toddler waits patiently while you untangle your
8 year old son's legs from around the rocking duck and carry him
back to the wheelchair. You push him closer to his brothers and
put on the brakes. Smiling, patient faces look up to you and say
"push me mummy" and you do - all the while looking out
for your son in the wheelchair waiting patiently.
The sun goes behind a
cloud it's shadow seems to cover the play ground. The shadow moves
as quickly as the children going from one end of the playground
to the other. Smiling briefly at the other unknown mother I bend,
lift and carry my son to the seesaw positioning him as I call to
his brothers to jump on the other end.
With a final bend, lift
and carry, calling to the others you all head home again. The simple,
short journey to the playground did become an expedition and whilst
you don't always reflect on moments like these sometimes the emotions
you experience may make you think twice before embarking on another
simple journey.
The outward signs of
rebuilding may seem to others that you have accepted your situation
- but they are not you and not living your life. On the inside,
when the full force of the knowledge of your child's disability
hit, the emotions it brought with it do not just disappear. They
seem to subside only – resurfacing when you least expect it
– sometimes as an overwhelming anger or sadness, or that exquisite
almost "sad-joy" at the smallest achievement. Just when
you least expect it, when you thought you were in control, one of
those emotions can sneak up on you. I know I am not the first and
will not be the last mother to shed a silent tear whilst watching
another child the same age as mine, doing something as simple as
riding a bike whilst thinking of what "might have been"
for my child.
After a cyclone hits
the outward signs of rejuvenation become evident but the shock of
living through the experience will forever alter those that have
lived through it. All the outward signs of rebuilding are there
but it is difficult to reclaim the person that you once were before
the storm hit. Mostly you continually make adjustments physically
and emotionally neither becoming a better or worse person just different,
perhaps stronger, more determined, possibly more assertive but definitely
a different person.
Diane McCarthy
Parent Support Worker
Association for Children with a Disability
NoticeBoard
September 2000
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